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I can't live like this much longer


SadBlueBee

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SadBlueBee Newbie

This pain is constant and nauseating it's in my back and stomach burns all the time.  My GI doctor barely knows about cealic they did an ultra sound came back clear. 

I can't sleep my stomach hurts it feels like someone ripped a scab off and like it's being eaten by acid 24/7 I'm starting to fail school, I can't work because of the pain I feel like crying, I kind of just want everything to end I've been in pain for a year and half now and doctors are just taking my money and not solving the problem it's driving me insane.

Just a burning nasunating feeling that never goes away, makes it hard to walk hard to live hard to drive to do anything I feel like I'm being tortured everyday.

 

dont know what else to do, I kind of hope someone on this site had similar pain and maybe can suggest what this may be? Because I can't function anymore.


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Jmg Mentor

Hello and welcome :)

I'm sorry you're having such a tough time. There are lot's of people here who have been through tough times of their own and come through the other side. There's no shortage of support and good advice available. However, it would probably help if you could put down some details about what medical checks your Doctors have conducted? Have you had a celiac blood test for instance?

Ennis-TX Grand Master
28 minutes ago, SadBlueBee said:

This pain is constant and nauseating it's in my back and stomach burns all the time.  My GI doctor barely knows about cealic they did an ultra sound came back clear. 

I can't sleep my stomach hurts it feels like someone ripped a scab off and like it's being eaten by acid 24/7 I'm starting to fail school, I can't work because of the pain I feel like crying, I kind of just want everything to end I've been in pain for a year and half now and doctors are just taking my money and not solving the problem it's driving me insane.

Just a burning nasunating feeling that never goes away, makes it hard to walk hard to live hard to drive to do anything I feel like I'm being tortured everyday.

 

dont know what else to do, I kind of hope someone on this site had similar pain and maybe can suggest what this may be? Because I can't function anymore.

Have you had the blood test for celiac? Or how about a endoscope with biopsies? These are the standards for checking for celiac disease. Open Original Shared Link
IF your diagnosed with celiac you have to follow a STRICT gluten free diet, as crumbs, or even residue from shared utensils/cookware/prep surfaces/shared condiments can make you miserably sick. There are tons of symptoms and everyone is a bit different, in the words of another member the disease is like a chameleon in the way the symptoms can evolve and change.

tessa25 Rising Star

In the US you can order blood tests online. If you want to go that route here is the info:

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive antibody test and costs $298.00 (not covered by insurance). The blood draw is done at your nearest Labcorp. You get your results in less than a week at walkinlab.com .

 

If you are going to buypass testing for some reason you can try a really basic diet for a couple of weeks. If you start to feel a little better you can slowly add on basic meats and veggies and see how you feel.

For a basic diet I'm thinking chicken cooked with salt and chicken broth.

 

I'm not a doc, just my opinion.

 

trents Grand Master

If you are not getting any cooperation from your healthcare providers you can also just try a gluten free diet for a few weeks/months and see if symptoms improve. You would need to educate yourself on where gluten is found, especially how it is hidden in prepared foods like canned soups and condiments. You would need to become a dedicated fool label reader and educate yourself on terms used by the food industry that can mask the presence of wheat, barely and rye.

Because your pain could be caused by other things, some of which could be serious, you still need to stay engaged with the medical community. And do realize that if you go with a gluten free diet it would render some celiac disease diagnostic tests invalid. If you were having testing done after going gluten free you would need to start eating gluten again before the testing was done.

GFinDC Veteran

Have you been tested for a stomach ulcer?  That's what the pain sounds like to me.  You can also get pain in your stomach from too much gas.  Another possibility is GERD.

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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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